Our daughter Hailey was diagnosed with Leukodystrophy in 2011, a terminal brain disease. There is no cure or treatment. In January of 2015 she had a Pacemaker placed. There are medical bills, prescriptions not covered by insurance, Dr. Appointments out of state, and surprise expenses that would take a toll on any family. One way to share our story is to share jewelry we created together. There are many places we want to take her.
Each necklace signifies a Hug for Hailey.

Saturday, September 29, 2012

Our main consern with the IVIG treatment is that we had assumed it didn't work last time. We gave her 5 doses over 5 days and we took her home and she still wasn't able to bare weight on her legs. They told us that this time they will essentually combine the 5 doses into 2 doses and see how that goes. Then the bad news...The neurologist wants to do another head, neck, and spine MRI. MRI #5& #6 the first of her head which will be about an hour and then the spine the day after which is about 1 1/2 hours. UGH! I hate that these MRI's take so long and I hate that they have to put her under to do them. I know is HAS to be done, but it doesn't make it any easier.

That night they administer the first "doses" of IVIG. Again with the pretreatment, first tylenol, then solumedrol, then the benydril. The benydril helps Hailey to fall asleep and sleep through the treatment. Josh stays until about 1 am and then heads home to take care of the pups we have at home, take a shower, and try to get some sleep until he's back the next morning. After the treatment is done, I change Hailey's diaper and she goes right back to sleep and I try to fall asleep myself. When you are going through something like this with your child, sleep is not easy to come by. When I do fall asleep I am awoken by a helicopter. Yes we have a semi-private room right next to the Heli-pad. It's must have been a rough night in Vegas because that thing was coming and going every 1/2 hour.

By morning time Hailey woke up when the Dr.'s came in to check up on her. Told us that the MRI will be later this morning and the neurologist will see us this evening. We should also have a few test results from the lumbar puncture.

When it's time for Hailey to go for the MRI we all walk with her while they wheel her bed through the corridors and I can't help but wonder why other kids are here. I compare the hospital to a prison. Not that I'd ever been to prison, just from what you "know" from tv and movies. You don't know what each person is "in for" and you don't/can't ask. The meals are edible but don't taste appetizing at all. The place smells, the tv selection is very limited and if you don't get a great nights sleep. Before the MRI starts I cradle Hailey in my arms until they are ready for her. She falls asleep and that should make it easier on us to hand her over. They ask me to put her on the table and before I do Hailey wakes up. They say they can give her the propofol while I am holding her and then I can put her down. I thought this kid was heavy before, as soon as that propofol went in she went utterly and completly limp. Like a wet noodle. I had to lean back so her head wouldn't roll off my shoulder. I put her on the table and I see the MRI machine. The sound that comes out of one of those is so incrediable loud and scary I don't see how they could do an MRI on a little kid without them being sedated.

Another long hour goes by and Hailey is done. We all go back to her room and they have us try and get her to wake up all the way. Hailey is not a happy camper. She is very restless and angry and wants to be held then wants to be put down and just can't get comfortable. She's allowed to eat as soon as she can wake up and I tell her we can go to the playroom before it closes and that makes her happy. After nearly 2 hours she's awake and eating and almost ready to go to the play room. When we put her shoes on she doesn't seem to have gotten worse, like we had been expecting. Remember when we got there she was walking on her own, but very unsteady. Today was the same. As long as we held her hand she was walking on her own. She was in a good mood now. She was ready to go play.

Josh's mom and Hailey playing in the Kitchen in the playroom. Anything having to do with playing kitchen, or tea party, or restaurant is right up Hailey's ally.

After this first dose of "concentrated" IVIG we are all shocked that she's coming around again. She is even standing on her own. She loves the playroom. We stay for as long as we can and then go back to our room for dinner and a movie.

The neurologist comes in and tells us the results from today's MRI. It's pretty much the same as it's always been. It showed diffused white matter. (That's a bad thing) He still wants to do the 2nd MRI tomorrow and as soon as we think he is leaving another Dr. comes in. He said that he has some results from the lumbar puncture. The only results he had was that her Thyroid numbers are not normal. The neurologist suggests that we talk to an endocrinologist. I have never even heard of one before, but I will add her to our ever growing list of doctors.

The next day Hailey has another MRI and this time on her spine which takes FOREVER! Nearly 2 hours! It was torture to wait. I just paced the hall. Once that was over it was off to recovery and then back to our room. Hailey was really out of it. There was no playroom that night. The results of that MRI was clear and the Neurologist suggested putting Hailey back on steroids, but he has a different plan this time. (I will explain that later) At this point I am kind of upset that he keeps doing this. On steroids she is good, off steroids we are in the hospital. Yet he insists she can't be on steroids forever. We decided at this point that I want to look for another neurologist and another pediatrician while I am at it. I also want to take Hailey somewhere else because I am not happy with the guessing game they are playing at these hospitals with Hailey. I ask one of the doctors where he suggested I go. I was told UCLA is huge and he thinks that would be a good place to go. I also ask about a new peds doctor and I get a name and number.

We aren't in the hospital that long this time. I think we were there a total of 4 days and by the time we were discharged Hailey was walking out on her own. I am thinking in my head, "the IVIG worked this time!"This was the first time I was taking Hailey home after an episode that she isn't starting from square one. I was so relieved thinking that we finally may have figured out that if we keep this kid on steroids and monthly IVIG treatments she'll be good to go...(if only that were the case.)

I make an appointment with the new Pediatrician. When she sees us for the first time and asks me Hailey's history I kind of, in a nice way, asks how much time she has because it's a long story and I know she has other patients. She told me to take as much time I as need. She was beyond interested in Hailey's story and helping me get whatever help I needed. I told her I wanted to go to UCLA and she told me she will get us there, and that she did.

Monday, September 17, 2012

Hailey finished her steroid wean on Thursday April 19th of this year (2012). Monday morning I noticed that she wasn't walking completely straight. I been through this enough times that the slightest little mis-step makes my heart race. She just FINISHED steroids how could this be happening. From August of last year she lasted until January. From January she lasted until April, but she's having an episode only 3 days after her wean. I call Josh right away and tell him what's going on and I almost even doubt myself calling him. What if I am over reacting? Do I really see something? It's such a slight change that I almost ignore it. Josh rushes home and we head to the neurologist. This part is interesting. I call Josh at 9:00am we at the neurologist by 11:00 am. I got the first available appointment. The Dr. sees she isn't walking well and tells us that this time he wants us to go to a different hospital. Sunrise Children's Hospital is right around the corner and he will call ahead to tell them that we are coming. He wants her to do another round of IVIG. Me thinking that that's all that's going to happen I am slightly less freaked out then all the other times. We get to the hospital and they have her room ready at 2:00pm. This is a NICE hospital! We get a semi-private room. This room is a sibling room. There is a sliding glass door that opens up the room next door into one HUGE room. We talk to the admitting Dr. and we go through our WHOLE history with her. She said that she has to wait on the medication orders from the neurologist, but in the mean while the attending physician and the neurologist have spoken. Here's where things go wonky.

They want Hailey to have another Lumbar Puncture immediately BUT there is no sedation technician available. So what's going to happen? Keep reading...

They also want Hailey to have another MRI. One of the head and neck, one the whole length of her spinal cord.

We will still have the IVIG and that's going to start tonight.

So for this lumbar puncture they won't sedate her but they will give her a Analgesic. They said that she shouldn't be in any pain after taking the medication and that she won't remember anything. They will also numb her back. Everything should go smoothly...well...it doesn't.

They put the numbing cream on her and have to wait 45 minutes for it to work. I ask them what they are going to look for this time because they already checked for MS back in August. They want to re-test. When time comes to begin the procedure they ask Josh and I if we wanted to stay. We both think it'd be best if we did stay. How I wish I could un-see or forget what I had to see them do to my little baby. I needed some analgesic medication. They prep the area, put gowns, get this HUGE needle ready and then tell us that they have to basically bend Hailey in half so they get the poke right. Right away Hailey starts crying. I know she's terrified. I'm terrified. The nurses sit her up on the bed and put Hailey's head in between her legs. Hailey is WHALING! I am practically underneath the bed between the nurses legs so that Hailey can see me and I hold her hand. The Dr. is talking through it. He says that the nurses have to hold her perfectly still, but Hailey is freaking out, trying to get out of this wrestling hold they have her in. The nurse is practically laying on top of her body that is folded in half. The Dr. pokes with a needle and I guess he misses because no fluid comes out. They are going to fill 4 vials. Again he says to hold her still. I am trying to talk to Hailey and tell her that we are there. I couldn't even tell you how long it's been. The Dr. pokes again and it works. The fluid starts flowing we just have to wait for the vials to fill. When that's all done they release Hailey and she just has a bright red face and is covered in snot from crying. I think I was covered in snot too.

So now that that's over with the nurses clean up this mess and then say they will be back to put the IV in...O.M.G...

They want to start the IVIG at 6:00 pm it's 4:00 now. I ask them to wait until they are ready for the IVIG then do the IV. They ask if that's okay with the main doc and it turns out to be fine. But when 6:00 rolls around I am dreading the poke...

Another MRI was done, now they are thinking Chronic ADEM, MS, or Leukodystrophy

We try 5 IVIG treatments that don't really seem to have worked

Our regular neurologist has a look of complete dread when he talks to us

We do a huge blood draw for the Leukodystrophy panels

We get to take her home, but she isn't walking or even baring weight on her legs

Okay here we go...

This is the second time we are taking Hailey home from the hospital and she doesn't seem any better then when we got there. No one thinks the IVIG treatment worked. We take her home and day 1 goes by fine. Day 2 not so much. Josh wanted to go work out, so off he went. Josh's mom was getting ready to go running. I am downstairs with Hailey and she tells me softly and weakly that her head hurts. Not even 2 minutes later she vomits. I call Josh to come back home and Josh's mom helps me clean her up. She vomits again and again. I call the hospital and ask them what I need to do. The Dr. on call says she could have caught a bug in the hospital, or she could be vomiting from the IVIG treatments. (Turns out we later find out it was from the IVIG/Steroids) She continues to vomit for a straight 24 hours. We try and keep her hydrated, and try to feed her rice or saltines. I didn't even have the desire/urge to feed myself. My friend Sarah cooked a few different meals for our family and brought them over. We were so grateful for that. Now Hailey has a fever, but they said not to bring her in unless it's like higher then 102* or something ( I don't quite remember that one exactly) so we give her tylenol and hope she keeps it down. I stay awake the whole night changing her cold compress on her head. We have Hailey in our bed and towels everywhere. We also had a bucket, but what 3 year old can make it in a bucket? It was a very long night. Hailey wakes up around 3 am and wants juice and a cracker. She eats 1 and sips the gatorade and falls asleep. After the 24 hours she stops vomiting.

In 2 weeks we will see our neurologist and he will put her BACK on steroids. In the mean while we have to see our pediatrician and ophthalmologist. Our pediatrician is as confused as we are as to what is going on and really offers no help in any direction. Since Hailey has been off steroids for so long we opt to continue with her vaccinations before she's put back on. Once a child is on steroids she's not able to have ANY vaccinations for 6 weeks. She gets an MMR and Rubella shot along with a Flu shot. She doesn't have any reactions to them, and honestly I was surprised but relieved.

We got back to see our Ophthalmologist and she dialates Hailey's eyes. Apperantly that stuff burns and Hailey isn't a fan. The Dr. says she has become near sighted in her right eye. The same eye that went crossed last August. Right now there is no need for glasses but we have appointments every 6 months.

Once again when Hailey is home for 1 week and she practices walking with a walker. At first she was kinda scared or intimadated by it. Her grandma and I decide to have it decked out for her. She gets the hang of it pretty quick. (On a side note looking back at these pictures I had forgotten how thin she was, the steroids will/have done a doozy on her. You will see in future posts)

Both Grandmas are with Hailey and the game of choice is Candyland. I can't even tell you how many games of Candyland we all played. Hailey is also into puzzles, but only watching you put them together while she supervises.

It's a new year so we get to have 12 more sessions of therapy at the Rehab Facility. Since we didn't think to change our insurance before the beginning of the year we have another $10,000 deductible which with that IVIG we totally reached within 3 weeks of the new year. Make sure you take note. Our insurance is that same as it was last year, nothing was changed. That info comes in handy later on.

Hailey goes back to see the neurologist first he is shocked that she's walking on her own. By shocked I mean totally and completely confused. We both had bet that he wasn't expecting that to have happen. He decides to puts on SUPER high steroids. 1 tsp = 5mLs she had to have 8 tsp or 40 mLs a day for 10 days. This will go down every 10 days for 3 months. By the way this stuff tastes HORRID! After trying to get this kid to take her medicine for the first week and having her gag every single time we tried hiding in different foods. I tried pudding, chocolate milk, prune juice nothing would mask the taste. We later found out that Walmart could flavor it by adding about a 1/2 pound of sugar to it. (exaggeration)
Since we have to go through so much of this stuff we have to go back and get refills quite often. The first time I went to Sam's club to pick up a refill they tell me that the insurance will only pay for X-amount of medication every month and she had reached that limit. So what are my choices? She needs this medication. We were told we could pay out of pocket and it's nearly $200. I think to myself I pay for insurance on a monthly basis, but they won't cover all the prescription needed. I am having to pay out of pocket anyway what do I need insurance for?
The next time I get a refill from Sam's club something super odd happens. The girl rings it up and I say I have insurance and the price for the same amount I just paid out of pocket was HIGHER then it was WITH insurance. HUH!?!? I told the girl that I was sleep deprived and I think I heard her wrong. With insurance the price is Higher then without? I asked her if that is what she just said and she said, "yes." That makes absolutely NO SENSE!! So I pay without insurance and the lower price. Ridiculous. But I don't care because I believe this stuff is truly helping Hailey. If I have to buy it by the barrel then so be it.

It's mid February and everything is back to normal now. Hailey is walking on her own and also back to her old self. Even talking better then ever.

For Valentines Day we decide to bake cake pops for her school's Valentine social. She's my favorite helper in the kitchen. She LOVES baking!

In late February early March Hailey's grandparents came down and Hailey went for her first sleepover with Josh's parents. I was a total mess letting her out of my sight. I remember having to take a melatonin to fall asleep. She was fine, I knew she'd be fine. I just need to have her close to me.

We also celebrated Josh's moms birthday while they were down with some yummy mexican food and mariachis.

In April a HUGE accomplishment was Hailey had been able to go up and down the stairs all by herself! It truly was a big deal. How many people take pictures of their kids going up the stairs, and yes I have video too! Everything is going great except that she is being weaned off of her steroids and is nearly done. It's starting to freak me out. I know she'll be done soon.

We make the most of every day. For Easter we had lots of fun. We dress up like bunnies.

We dyed Easter Eggs

We went for Easter Egg Hunts.

We get Easter Baskets from the Easter Bunny

Hailey is doing great and LOVING Pre-School!

We even participate in a FLASH mob!

Can you believe how great she is doing? We go back to the neurologist and he has the results for the 6 types of leukodystophies we had a blood draw for. He said that all six came back normal! I was convinced that there was no way she could have such a terrible life threatening disease. The Dr. said to continue to wean her off the steroids and he'll see us back in 3 months.

Towards the end of her wean it's April. She'll be on 1/2 mL every other day for ten 10 days then she'll be off again. When the last day of taking medication comes I give her the last dose with tears in my eyes. I know that these steroids are what's keeping her "Hailey" I just know that without them she'll relapse.

Friday, September 14, 2012

Monday morning we are set to have a blood draw on Hailey and this blood will be tested for 6 of the most common known diagnosed Leukodystrophy diseases. This 6 have had some sort of treatment given to patients which include, bone marrow transplants, radiation, and chemotherapy without any success. The thing we learned about these 6 types of the disease is that they are progressive once you have your first initial episode the patients continue to decline. They don't reoccurring episodes, but Hailey seemed to come back. Better then before in my opinion. In my heart and mind I don't feel as if this is what she has.
Once the phlebotomist arrives we all tense up. I ask why they can't just take blood through he IV? Once medicine is administered through an IV you can't draw blood from it. So we have to poke her. I asked the tech if she was really good at her job. I only want to have to poke her ONCE! After they prep Hailey they have all the vials lined up and gauze and tape ready they pull out the tourniquet. Hailey knows what's coming and she freaks out. You can't blame her can you? Well after a few moments with our breath held the tech pokes and hits the vein! Finally! Hailey is still screaming but the blood is flowing.
I remember watching those vials fill up and knowing how much information is stored in that blood. What was the test going to tell us? We'd have to wait 4-6 weeks to find out.

Josh's mom flies down from Washington and is at the hospital with us. We should be going home tomorrow after her last IVIG treatment. Our regular neurologist is back and comes to the hospital that night. The look on this guys face when he saw that we were back in the hospital was a look of dread. He knew this was something more then ADEM but he had told us this could be just a chronic case of ADEM. Hailey will be discharged tomorrow and put BACK on steroids. The highest dose I think he's ever prescribed. He also recommended that we see a geneticist. The problem with that, there is only ONE in the WHOLE state and her waiting list is a YEAR long! Even with a STAT referral it's been 9 months and I still don't have an appointment.

Hailey's granny sent her a gift that Josh's mom brought down. Hailey had a new friend. When you press the paw the dogs ears flap up and down really fast and she thinks this is pretty funny.

We try getting Hailey to bare weight and walk a little bit. There isn't much difference from yesterday to today with that though. I am starting to think this IVIG treatment isn't what she needs. Josh's mom brings dinner. A home cooked meal. There is just something about that you miss when you don't have it. Today and tomorrow are pretty much the same. Get the IVIG and sleep. Tomorrow we get to go home.

Thursday, September 13, 2012

So here we go again. Hailey needs to fast before the MRI so that means that she'll need IV fluids, that means an IV and that means I'm freaking out. Remember the fiasco last time we stuck this kid and all her vains blowing and then her arm getting tied up like Fort Knox? Well here we go again. This time was better only took two tries and she's wrapped up and ready to go. Hailey sleeps through the night and I am there alone in a chair wondering how we ended up here again. Things were going so good. What's the MRI going to say? What did the MRI in December say, and if it wasn't good how come no one told us? There is no way I can sleep and Josh had to go home, but will be back in the morning. It was a pretty long night.

Hailey's MRI is in the late afternoon and they will only do her head. At least I know it's only going to be 45 minutes or so. The transport team comes up and it's time for them to take Hailey. We walk down to the MRI room with her but can't go past the doors. When they take her back she's crying for us and she's scared and I just have to hold it together for a few more seconds then when she can't see me I can break down. They lay her down on the table where she will enter the MRI machine and give her the propofol. It's eerily silent, she's asleep now. We just sit in the waiting room. I can't eat, I didn't sleep, I hadn't even used the bathroom since I've been there. We just wait.

Her 45 minutes are over and we can see her now. They will wheel her in a bed back to a recovery room where they will monitor her and we follow. They tell us the scans will be ready in time for the neurologist to see them when he comes in at 5:00.

Once 5:00 rolls around my stomach is in KNOTS! What is he going to say, what's going on in her head, why is this happening? When the Dr. finally does come in he asks if we can leave Hailey with a volunteer and go with him. He wants to show us something. This can't be good. We leave Hailey and go with him. He has her scans up on the screen. He's explaining to us what White Matter of the Brain is and what Myelin is. He mentions ADEM again, he mentions Multiple Sclerosis, and he mentions Leukodystrophy. If anything you hope for ADEM, then MS, but you don't want that L word. He had suggested that Hailey have an IVIG treatment intravenous immunoglobulin. If she has ADEM or even MS then we should see a significant improvement in a short amount of time. He wants to do 5 treatments, 1 every 24 hours. After the 5 days if we do NOT see this significant improvement then he will want to draw blood for 6 most commonly known Leukodystrophies. He tells me that this MRI is a picture that's worth a 1,000 words. All I see is my baby's brain on the screen.

I don't know if I took a breath the whole time this was happening and he was talking. I felt my chest tighten. Could you imagine hoping for one life long disease over another if those were the 3 you had to pick from? He wanted to start the IVIG tonight and check back with us tomorrow. I was so curious about the IVIG.

The immunoglobulin G is extracted from over 1000 blood donors to commonly make 1 dose. We were going to have 5 doses. 5000 Blood donors are going to try and help Hailey. The nurse that will be administering the IVIG said that it's a 6 hour process for the transfusion. First they do a pre-teratment. It consists of giving Hailey tylenol to prevent a fever spike, then some benydryl to prevent an allergic reaction, then some solumedrol which is an anti-inflamatory. Each given at different times until complete. Then comes the IVIG. The nurse carries it in like it's so delicate. I am guessing it's SUPER expensive...I guess right.

The IVIG can't be given all at once. You get a little, the nurse doesn't leave your side, you get your blood pressure checked, your temperature checked and your heart rate monitored. Then you get a little more, monitored again and so on and so forth until the last couple hours of it. The nurse then lets it do what it does and will come back to put an IV bag on. It's really interesting to read about IVIG and the many uses known and the experimental uses as well. Hailey was knocked out by that benydryl but woke up because her bed was soaked in sweat and urine and we had to change her sheets. It was time to go back to bed so I reached through her crib and held her hand until she fell asleep.

Saturday morning Josh comes and lets me know he asked his mom to come down and she's going to help. She'll be here Monday. Saturday we are going to spend the day in the playroom and taking rides in the wagon around the nurses station. We try and attempt for Hailey to bare weight on her legs but she can't so we don't push her. Doctors come and go and nurses change shifts and we are playing a waiting game.

Saturday night another IVIG. Another Pre-treatment. Another 6 hours of watching Hailey sleep. Josh stays the whole time too. Sunday will be a quiet day. Family knows we are here, a few friends too. My friend Christina comes to visit Hailey and brings some fun things for Hailey to play with. On a side note props to Crayola for Color Wonder books and markers! Hailey loves these! It was ideal for her since she didn't have good control over her arms and hands that she didn't get marker anywhere but the paper. I need to stock up on this stuff! If you ever see this on clearance let me know. It's not only fun, it's great OT.

Later in the evening we try and get Hailey moving and out of bed. The nurse comes in and asks when Hailey last pooped? Uh...it's been a while. Since before we even came. Her belly is hard and they want to try Miralax but if that doesn't work...Suppository.

Hailey has begun to at least bare weight on her legs and doctors are asking if we see that significant improvement we are waiting on. I wouldn't say it's significant, but it's something. That doesn't fit well I guess, because now we are see a few more doctors for this quiet Sunday and they start asking us lots of questions:

What's your family background?

Are you of Jewish decent?

Does anyone in your family suffer psychotic episodes?

I know by the end of the night I am going to suffer a mental break down if they don't get to why they are asking these questions. The change in Hailey although better then nothing is not what they were hoping/expecting. They want to go ahead and do that blood draw for the Leukodystrophy panel on Monday. It has to be shipped to John Hopkins in Maryland. The results take 4-6 weeks. At this point when I ask about the L word the doctors tell me that whatever I do, don't google it right now. I just know it's something really really really bad and something you don't come back from. They are going to need a LOT of blood. Let's hope they can get it all in one draw. There is not a day that goes by where I don't think to myself, "I am dreading tomorrow."

Christmas passes, and it's a new year. We are doing well. Hailey is walking on her own, her speech is way better, she's been off steroids for over 6 weeks and she had been RE-potty trained. Potty training the first time was hard enough. I had to do it twice so far. With ADEM they say that if you can make it 6 months without having a relapse the chances of another episode are pretty slim...not impossible, just slim.
School starts back up and Hailey really loves taking the bus. On Wednesday January 11th things seem as normal as the day before and the day before that. She goes to school I'm at home doing my thing and before I know it the bus is dropping Hailey off. The bus driver said that Hailey is crying and her pants are soaked from her wetting herself and I just figure she had an accident, no biggie. The stairs are still a problem so I help go upstairs so I can give her a bath. The water is running and I take her ponytail out and tousle her hair. When I do I feel a HUGE goose egg on the right side of her head. Like abnormally big for a goose egg. I ask her if she has an owie and she said she bumped her head. I didn't get a call from the school or the teacher or a nurse or anyone and this obviously happened at school. I grab my phone to call and I look in Hailey's backpack and there was a little note that said. Hailey bumped her head at school, but seems fine.

WHAT?!?!?!

Maybe for a normal kid, but not for one that obviously has neurological issues. I am freaking out! I call but there is no answer so I have to leave a message. A very urgent, not very polite message. I didn't understand how I could have just got a note in a backpack after my child suffers a head injury. I call Josh and tell him what is going on. Hailey isn't acting off or crying or falling while she walks so maybe it is just a bump. Kids get bumps and bruises right? Even though I try to avoid my kid getting bumps, bruises, and scraps I guess it can never be 100% avoided.

The next morning I get a call back from the teacher and she said that Hailey did trip and fall and hit her head on a cube chair. It was right as they were walking to the bus and she didn't think more then a note was necessary. (I'm just paraphrasing, I don't remember the exact words she said but it was similar to that.) From that point on I need to be made aware of anything that happens to Hailey no matter how big or small. Hailey will go to school and if anything is off I will get a call.

Hailey goes to school and towards the time when the bus is going to drop her off I get a call. The teacher tells me Hailey's balance was off and she fell twice with no one around her. My heart is racing. Is this happening AGAIN?!? I get Hailey off the bus and it's obvious things are not right. She can't walk straight at all. I call Josh and tell him I am calling the neurologist. The Dr. isn't there so I talk to the on call doc. He said that I should take her to emergency and he'll meet us there after he's done with his clinic (after 5:00pm)

We take Hailey back to the emergency room and they admit her with ATAXIA

I don't think I ever even knew exactly what that meant for the longest while. I never looked up the definition of Ataxia. I just guessed what it was. So this is a new neurologist. He does work in the same office as our original doc. He said that he wants Hailey admitted and scheduled for an MRI. I tell him that she JUST had an MRI about a month ago but we never got the results because our appointment for that is next month. So we'll be at the hospital and she'll have an MRI in the morning. For some odd reason I think to myself tomorrow is Friday the 13th. My mom is from Peru and Friday the 13th is a lucky day, but it wasn't for us.

Friday, September 7, 2012

I guess I ran out of space for tabs up at the top so I think I will post on the main blog, but leave links in the tabs so I can keep everything in order. P.s Sorry for the grammatical errors and mis-spellings.

Where did I leave off?

We were in the hospital for over a week. We were told Hailey has ADEM, she's on a massive dose of steroids, but she's home and taking steps on her own. I take a moment to think, how much did this whole hospital thing cost us? We were all relatively healthy before all this, so we has the "just in case" insurance plan. The one with a $10,000 deductible! I put that in the back of head for the moment and kept moving.
So now I must get on the phone and find help to rehabilitate Hailey. She will need Physical Therapy, Speech Therapy, Occupational Therpy, and she will need to be enrolled in a school program for preschool. First on the list is to call a rehabilitation center that is 1) Covered by our insurance 2) Has availablity and 3) is for children. The hospital tells me about a place called Health South Rehabilition that will be able to take Hailey in about 6 weeks but only for Speech and for Occupational therapy.They don't have Physcial therapy available at the moment. Of course they don't that is the one she needs most. So I have to take her for an assesment and based on her ability they will put a schedual together for her.
Our first day there I tell Hailey that we are going to school and she's pretty excited. She'll have OT and ST back to back so we will be there for a good block of time. I know all things take some getting use to and this experience was one of them. We sign in, pay our co-payment and then take a look around. Hailey had to be the youngest person there by at least 50 years! Hailey had asked me if we were going to see granny here...LOL! Hailey had never been in a "school" environment and I had told her that was where we were going, but this place looks like a hospital. So besides re-learning how to feed herself and color she'll have to learn how "teachers" work.
Our Occupational therapist was a real nice guy, but I don't know exactly how much he had worked with children before Hailey. Kids maybe, but a 3 year old not so much. OT was a lot of fun. You get to eat applesause with a spork, you get to play with Play-doh, hit balloons, lace cards, and take off your shoes (just to put them back on again). Now if you gave a kid Play-Doh and just let them have at it, it's fun and exciting, but when the "teacher" tells you what shapes you must make with the Play-doh it doesn't seem as fun. I remember the OT therapist telling Hailey when she wasn't listening that if she wasn't going to "make a worm" he would just wait until she was ready to. Well we only have an hour for therapy and Hailey when being stubborn, would out wait him. I had to tell him that he gets paid by the hour...
Hailey enjoys speech therapy a lot. The therapist brings an iPad and tells Hailey if she does her work she can play with the iPad. Works like a charm. The ST works at the school district so she deals with little kids every day all day. We even get homework to take home. At this point I wonder how they can tell me that as bad as Hailey's speech was effected that she only required 1 hour of each therapy a week. I found out that it's not up to the therapists, it's up to the insurance. Not only that, insurance said that we can only have 12 weeks of therapy... Oh insurance, how I have a love hate relationship with it. I know Hailey needs more help and I call around to private therapy businesses and the cheapest I had found was $100 per hour, per therapy, but you can get as many sessions as you want. So if I wanted her to go to all three therapies 3x's a week it'd be $900 a week. I felt like a bad parent when I figured we couldn't afford that. It's something she NEEDS. So I do my best to be her OT and ST.
In October Hailey finally gets in to a physical therapy session at the rehab center. This therapist also works for the school district and is very good with kids. She works Hailey too. Up the stairs, down the stairs, over rope, jumping on trampolines. Hailey loves PT, but again, 1 hour a week isn't going to cut it. I tell her that we have an evaluation at the school district to get Hailey into pre-school and I want to know if she will get PT there too. She had said unless your child is in a wheelchair or needs 24/7 assistance to walk I most likely won't get it. Ugh! The school district, is another love/hate relationship. (you'll learn more why later)
So all of September and October we go to the rehab center once a week to do therapy and things are going great. I get a call from Child Find (this is where they will decide if she'll go to school) and we have to go in for another evaluation. Now you have to keep in mind that this whole time we are thinking ADEM for a diagnosis. Evaluations take 2 weeks. Hailey meets with a Speech, Physical, Occupational and psychological theripist, along with a nurse, regular ed and special ed teachers. After all the meetings they call us in to discuss what they recommend. This was one long meeting. We had to hear what every single person had reported and how they think Hailey should continue. First they say that they would recommend that Hailey be put in a Special Ed Pre-school Program through the school district. There she will recieve 120 minutes a month of Speech therapy. She doesn't quailfy for Occupational or for Physical therapy. She will also be taking a bus to school. A ton was going through my head. The bus thing was not sitting well with me. They tell me I would have to call and set that up throught the transportaion department. (I might hold off on that for a while...). I couldn't imagine sending my little 3 year old on a school bus and just waving goodbye. I ask why Hailey quailifies for therapy insurance covers but not for therapy in the school. They tell me that basically if Hailey can sit down in a chair and get up and out of a chair no PT is needed. They also said that OT is part of the cirriculum in school when they learn to color, eat lunch and write their names..? This is mid-October and I just have to wait until they find a school with space for her. A week later I get a call that Hailey's first day is Nov. 2nd Now we must go shopping for a backpack!

Two weeks after Hailey finishes the steroid wean she was on since August something goes wrong...It's Halloween day. Hailey was having trouble blinking her eye, that's what I noticed first. Not both just one on her left side. Then I go to tickle her and when she laughs only HALF of her face works. Right away I think, Is she having a stroke? Did she already have a stroke? What the heck is happening now? This is FREAKING me out!

Right away I called her neurologist and tell him what is going on and how this is URGENT!! I get told: "I think I know what it is, you don't need to bring her in, but, if it gets worse call me back. Um...WHAT? I tell Josh and he said go with what the Dr. says. She how she's doing after tonight and if I want to take her in we will go tomorrow. So like I said it's Halloween night. and I have been telling her we are going trick or treating for days. We debate and then decide we could go to a few houses then see how she feels and go from there. Whatever is going on doesn't seem to be bothering her. I ask if it hurts and she says no. So we go trick or treating.

The next day it's the same no worse, but I don't like it and we take her into the neurologist anyway. He tells us it's what he had thought it was and it's called Bell's Paulsy. It's isn't something that was related to "ADEM" and it should go away in about 6-12 weeks. She ended up having a little residual effects from it but it did clear it's self up. I was curious to how she got it. I remember brushing her teeth and seeing a little white dot on her tongue. I thought it was a swollen taste bud but it was some kind of canker sore...

So now she's off steroids, It's November 2nd and it's her first day of school. She is super excited. I take her and show her who the teacher is and they tell me to just leave her and pick her up in 2 1/2 hours. I had no idea what to do with myself at home...I go to pick her up and she does NOT want to go home. I tell her that she gets to come back tomorrow, but she wants to stay. She LOVES school!

The rest of November goes by without a hitch and we have an MRI scheduled for December 16th. They told me I had to make an appointment with the neurologist for the results. When I call to do that they schedule me for February 2nd. Well...that's kinda a long ways away and I questioned that. The lady said that if there was something urgent they would call to reschedule. With every thing we have been through, the uncertainty if this whole ordeal is behind us, and the mountain of bills that have started to pile up we decide that this will be the first time we won't make to Josh's hometown for Christmas. Josh wasn't too happy about not seeing his family, but we had to do what we thought was best. We had our own family Christmas at home. Most my family lives by us so it's not like we were totally alone. It was just different.

The day of her MRI I was a wreak again. They would have to sedate her, but she should only be out for about 45 minutes. Then we were going to take her home and have a pajama movie day in bed. So The MRI goes fine, they don't tell us anything. We go home, relax, watch Phineus and Ferb on loop. She seems as you would expect. Cranky, groggy, hungry. So now we just have to have Christmas, celebrate the new year, hope this is all behind us and go to our appointment on February 2nd for the MRI results.